Fighting Parkinson’s Every Day

I used to say I knew people in show business, now I say I know people with Parkinson’s. Barry Blaustein

Barry Blaustein joined our boxing class a couple of years ago, not long after he was diagnosed with Parkinson’s Disease. It was clear from the outset that Barry is a fighter, in so many ways. With flowing white hair and a big smile, he attacked the heavy bags with glee. His strength and skill on the heavy bags impressed everyone in our little group. Barry fit right in immediately.

His story, like so many of ours, takes a circuitous route. Barry lost his sense of smell 7-8 years ago. Then began dragging his feet. His voice was getting lower and he just seemed sluggish. He did not know that these were symptoms of Parkinson’s. First, Barry saw his regular doctor, who dismissed his symptoms and said that he did not have Parkinson’s.

The symptoms persisted, so Barry made an appointment with a Neurologist at Cedars Sinai in Los Angeles. The doctor there put him through the routine for diagnosing PD, walk down the hallway, open and close your fingers, tap your foot, etc. and quickly confirmed that Barry did have Parkinson’s. Since no one else in his family had PD, this was a surprise. As Barry says, he is the pioneer in his family.

The doctor recommended that he exercise 30-35 minutes a day. Barry’s fiancee looked up classes on the internet and found boxing classes for PD (StoPD). He took boxing lessons when he was younger and knew he had fun doing it, so decided to give it a try. Barry also walks 30-40 minutes or bikes, and goes to Pilates a couple days a week. He usually exercises 7 days a week, but occasionally takes a day off. However he has recently developed sciatica, which Barry says is much worse than Parkinson’s.

“People with Parkinson’s are fighters”

He asked his doctor once why he chose to treat Parkinson’s, the doctor said “People with Parkinson’s are fighters”. Barry agrees. “We don’t sit back and do nothing. I didn’t do anything to get Parkinson’s (unlike many other diseases) If I had cancer and smoked cigarettes, I would say I shouldn’t have smoked. If I had heart problems or a heart attack, maybe I should have lost some weight. But I didn’t do anything to cause PD.”

He is fortunate that he gets more sleep, unlike many others with PD. Melatonin works for him and helps him to sleep better. Otherwise, he takes Sinimet (Levadopa/Carbidopa) only. His tremor has gotten a little worse, but he notices it more than other people. He also gets more tired, but that could be from getting older. His handwriting, which was always terrible, has gotten really bad. Now he says “I will write stuff and then will look at it and think, what the heck was I doing”. Usually he types and if he starts to shake, he will stop and exaggerate the shake and shake it off.

Having Parkinson’s doesn’t really affect his work. After a long career as a film writer and director, he turned to teaching screen writing at a local university. For the last 7 years, he has been primarily a college professor. He tells his students he has PD, always making the same speech at the beginning of a semester: “I have Parkinson’s so if you see me shake, that’s a tremor from Parkinson’s, so don’t worry about it. If my voice gets low, just tell me to raise my voice, if I say anything really mean to you, that’s not the Parkinson’s, its exactly how I feel about you. They all laugh.” He approaches it with humor which puts them at ease.

Recently, he went back to writing scripts and along with his writing partner David Sheffield, he just wrote a new movie for Paramount: COMING 2 AMERICA, a sequel to COMING TO AMERICA, that the two of them wrote 30 years ago. “They didn’t know it was being written by a guy who has Parkinsons”

This past year, Barry has gotten involved with the Parkinson’s community. Last fall, he was a speaker at the Parkinson’s Foundation Walk in Los Angeles. He had participated in a few walks before and his daughter got very active with the Parkinson’s Foundation as a result. She created some background materials about Barry to send to them. After meeting with with Barry, they asked if he would be interested in speaking publicly for them. He went to a workshop a couple of weeks ago and was asked to become a spokesperson for the Foundation. He will be going to speak around the country, do some PSA’s (Public service announcements) and other things. As he says, he is the new “Jerry’s Kid”. He used to say, “I knew people in show business, now I say I know people with Parkinson’s.”

What does the future look like for him? So far he has made no major changes in his life, but knows he will eventually have to consider making a move because he lives upstairs in a duplex, and the stairs can become a problem. He is looking forward to speaking on behalf of the Parkinson’s Foundation, and becoming more involved with the Parkinson’s community.

I asked if knowing People with Parkinson’s has changed his life. He went to a support group once but didn’t find it all that helpful. He said that too often, people are just griping. However, Barry said the people in the boxing class are very brave. “I wish our boxing group got together every once in awhile and talked about our lives. We are more than just our disease.” What a great idea! Let’s make it happen.

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2 thoughts on “Fighting Parkinson’s Every Day”

I love hearing about others with Parkinson’s who have the moxie and attitude that Barry has. Thanks for this.

And thanks for the weighted blanket suggestion. I asked my husband if he would be willing to try putting our duvet up over us instead of turning on the electric blanket, and he was game, so we tried it. The very first night I slept clear through, the first time in ages! The second night, same thing. The weather has warmed up, and it’s not as cold in the house now, so I’m not quite as cozy, but it’s still better to have the weight. I can’t thank you enough for this huge improvement!

Disclaimer

Dear Readers: I love to see your comments and get your emails as we share our collective experiences. I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctors.

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